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Arachnoiditis: Trying to find a specialist

Spine Health | Last Active: Mar 31 2:11pm | Replies (325)

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@joanmahon

Hi Margaret, I am an arachnoiditis patient, diagnosed with proper MRI´s in 2010. Started when surgeons used Pantopaque for diagnosis, at a time when MRI´s did not exist (1973). I needed surgery for laminectomy and fusion. I trust this diagnosis provided in 2010 because it came from Dr. Antonio Aldrete, who wrote several books and many articles about Arachnoiditis. He has since retired, however, and is no longer available for consult (I believe he has retired to Argentina). Have been fortunate to see Dr. Forest Tennant in 2017, but he closed his practice at the beginning of 2018. All I´ve ever wanted was to have is a way to "keep going," and have tried all sorts of land and water therapy, as well as various pain relief modalities, as instructed by Dr. Aldrete. Now am stuck on hydrocodone for the past several years...and feeling the effects. Now having trouble walking and driving, and can´t get to water therapy 20 miles from home. Feel as if I must start accepting an end. But not ready....until I manage to get to Mayo, Neurology in Jacksonville. Have appointment for mid August. This is a long reply, but one that may give some hope. I have lived with ARC and AA (adhesive arachnoiditis) since probably 1973, when it all began. Very important to get good diagnosis to be sure a person is dealing with this, and then try to read all you can about it. There is loads of information, especially the websites from Dr. Tennant. In my next note will give everyone those websites. Meantime, please do read up Practical Pain Management website, and search for "Arachnoiditis" once in. Search for Arachnoiditis everywhere you can, INCLUDING You-Tube. Knowledge is power. Especially at a time when most physicians know little about this condition listed in the National Organization of Rare Disorders (NORD). Self-education is the key now. Please forgive the length of this one!

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Replies to "Hi Margaret, I am an arachnoiditis patient, diagnosed with proper MRI´s in 2010. Started when surgeons..."

You mention 2 great doctors, may I add, The Burton Report, There is another informative web site, Arachnoiditis a quiet web of suffering. find them also on Facebook. Within their pages we can offer information on Aracachnoiditis, Adhesive Arachnoiditis which is worse, do's and dont's when thinking about therapy, aqua therapy, exercise or miracle cures. PT, Aqua Therapy, Stretching, I did it all because dr's thought it would help but it caused more pain. They were not to familiar with AA.I trusted them. I have A.A./BJA: British Journal of Anesthesia, Chronic Adhesive Arachnoiditis. Very informative. Joan you are so right when you say research.